Sunday, October 20, 2013

Disclaimer: Woodbine House provided me with a complimentary copy of Body Talk: Teaching Students with Disabilities and Body Language for review purposes. The opinions expressed are my own and have not been influenced in any way.

Ever since The Boy was diagnosed with autism, doctors and
therapists have told me that The Boy has no sense of personal space. (Neither
do most of the folks on the New York subway, but that’s for a different blog…)

As The Boy gets older, personal space has become more of an
issue. People are more likely to laugh off a two or three-year-old touching
their face. A big seven-year-old touching an adults face? Probably not. The
older The Boy gets, the more worried I become. Living in a city like New York,
getting in someone’s personal space is the kind of the thing that could lead to
serious trouble.

Working on personal space has become a goal at school and at
home.

I was really excited about reviewing Body Talk: Teaching
Students with Disabilities about Body Language by Pat Chrissey. It’s the kind
of book that I know I will return to again and again.

Children and teens with autism and other developmental disabilities can be taught the language of nonverbal communication with the practical strategies developed by veteran special education teacher Pat Crissey. More than 100 activities break down elements of body language into teachable components.

What I appreciate about Body Talk is that it really goes
step by step and breaks down all forms of body language: emotions, facial expressions, posture, body
orientation and eye gaze, personal space and touching and gestures.

However Body Talk just doesn’t tell you what to do – it
shows you. The activities and games are great ways to make learning fun. It’s
simple enough to be done at home one on one or in a group setting at school.
What’s especially helpful about this book is that it comes with a CD so you can
easily print out all the activities. I printed out the personal space activities for The Boy's teacher.

Disclaimer: Woodbine House provided me with a complimentary copy of Body Talk: Teaching Students with Disabilities and Body Language for review purposes. The opinions expressed are my own and have not been influenced in any way.

Saturday, October 19, 2013

Dr. Sanjay Gupta and Everyday Health explores how Minorities are disproportionally impacted by the rising autism rates. With less access, it could drive up healthcare costs for all in the long run.Oh...and I'm also in the video.

You can read the article - Autism Strikes Some Families Harder Than Others - on Everyday Health.Just to clarify some things in the video:* Norrin was still getting home base (and center base) services from a SEIT (Special Education Itinerant Teacher) between 3 and 5 years old through CPSE (Center of Preschool Special Education). Unlike like our Early Intervention experience where we got really lucky with an amazing therapist, we went through 6 SEITS in 2 years before hitting the jackpot with a really great person. One SEIT quit after 3 days because of parking (she was used to visiting homes, where she could park in a driveway) and another SEIT told me, "my husband has concerns about me coming to this neighborhood." One agency dropped me after I expressed concerns/complaints about a SEIT.

* Norrin was placed inappropriately during his kindergarten year. That was the year I had to sue the Department of Education because the school failed to provide an Occupational Therapist. After 8 weeks of paying out of pocket (totaling $1250.00), I was given a waiver letter to continue outside OT services and no longer required to pay out of pocket. The OT was able to bill the Department of Education. I sued the DOE for full reimbursement for the money I spent on OT and later that year, I had to sue again to have Norrin removed from the school. * For the last 2 years we've been paying out of pocket for ABA therapy at home (after school) from an agency called Center for Autism and Related Disorders. We use our medical insurance to pay for this therapy. I am very lucky to have a job with really good health insurance coverage (we have an autism advocate that helps file medical paperwork) and thanks to the Affordable Care Act, I live in a state with autism coverage. * Over the last five years, I've read many books that were helpful and inspiring. However, they are predominantly written by white, upper middle class women who were able to either move, hire an attorney and/or quit their careers to stay home with their children. These were not options for me. And reading these books in the beginning, I felt as if Norrin would never be able to "get better" since I could do any of the things I was reading about. I now know better.

Autism is an invisible disability and it’s easy for many autistic kids to pass for “regular.” But when there is a population of kids with autism in the same building as “typical” kids, there needs to be training and awareness. Everyone in the building needs to understand what autism is and what it ‘looks’ like. If the Department of Education is not prepared to do that, then maybe they should start creating public schools exclusively for kids with autism and/or special needs.

Thursday, October 17, 2013

October is Breast Cancer Awareness Month. The month to think pink and have faith for a cure.

Breast cancer is the most commonly diagnosed cancer in Latinas. Even though Latinas have lower breast cancer rates than white women, they are more likely than whites to be diagnosed at a later stage, when the cancer is more advanced and harder to treat. Latinas are also more likely to die
from breast cancer than white women diagnosed at a
similar age and stage.

The other day I was scrolling through my phone, trying to clear out space by deleting photos, messages and apps I don't use. I came across a text message I couldn't delete. It was from my friend, Della. Aside from a few photos, a signature in my yearbook, memories and her funeral prayer card - that text is all that I have left. And I'm not ready to let it go. It still doesn't see real. Or fair. Della was too young to die (only 38). She had a daughter. A mother. Family. Friends. Back in June, my blog friend Shell of Things I Can't Say allowed me to guest post and I decided to write about one of the last times I saw Della alive. (note: when I originally wrote the post, I changed Della's name to Martha.)

***

“Remember the picture of us on the field?” Martha asked. “I love that picture. It’s one of my favorites.”I remembered. It was taken twenty years earlier, on the last day of senior year. I wore a blue and white floral shirt, she proudly wore our senior class t-shirt, my arm around her shoulder, both of us smiling into the camera, our yearbooks in our laps.

We were just girls then, with bright eyes, big smiles and bigger dreams. We believed we had our whole lives ahead us. It was a time without boundaries or regrets. Before responsibility, motherhood, disability and sickness.

We were girls who didn’t know the years between then and now would go so fast. We didn’t see ourselves, twenty years later, sitting in a hospice room on a Saturday afternoon.

“It’s one of my favorites too,” I said.

She smiled. “I looked healthy.”

I said nothing, not wanting to agree but we both knew Martha was right. I looked away ashamed that I put off seeing her for weeks. But I was scared. I had never visited anyone at a hospice before. I hadn’t seen Martha in a little more than a year. But I knew the breast cancer spread to her brain. And I knew that Martha had little time left.

Monday, October 14, 2013

We were married on a whim. The decision came to us on a
plane en route to Dominica. “You want to?” he asked. “Sure!” I answered.

Without a plan or a care in the world, we made the
arrangements to marry on our very first vacation together. We strolled through
the market place in search of silver rings.

We exchanged our vows in casual cloths by a waterfall in the courtyard of the hotel
for all guests to see.

When I returned to work as a newly married woman, I told one
of my co-workers. Before congratulating me, she demanded to “see the ring.” I
explained that it was unplanned and held up my hand with my silver ring
that was too big.

“Oh…well,
congratulations,” she said. But I could tell that she thought I was cheated out of a princess cut diamond ring like the one on her finger. (She was divorced the following year.)

***

A year later on our 1st year anniversary, The Husband and I threw a wedding reception. The party was for our family. I just wanted the pretty dress. But even that day was low key.

It was on that day - our 1 year wedding anniversary that we were supposed to exchange rings once again. The Husband picked them out, really. I wanted to go to the local jewelry store but he did his homework. He found this Japanese jewelry store in Soho. We picked out our rings and had them engraved.

Mine: He won me over.

His: She wore me down.

On the day of our anniversary party, we meant to exchange/renew our vows. But we got so caught up with family and friends and the dancing, eating and celebrating - we never did. At the end of the evening, when it was just us - we exchanged rings. No vows or words were said. Just our rings and a kiss.

1 year wedding anniversary June 2004

***

As I sat on the floor of my hotel room, unpacking my suitcase and shaking out my clothes searching for my ring for the 20th time, I wondered: How could I lose my wedding ring? Where could it be?

I searched the room and all of my bags. I checked under the beds and behind the toilet. I even took a cup and turned it upside down before looking one last time - it's an old wives tale someone shared with me. I asked the cleaning woman and reported it to the hotel. No ring.

I thought of The Husband, home with The Boy so that I could attend a blog conference. It's because of The Husband's commitment to me and our family, that allows me to do what I do. Without his support, I couldn't do it.

As I sat in the hotel lobby on Sunday morning with my suitcases packed, staring at my naked hand, I started to cry. I thought of my flight from New York to Atlanta - how with every bump of rough air I clasped my hands and looked at my ring. How could I get back on a plane to New York without it? Hours later, I walked out of LaGuardia airport and was greeted by The Husband and The Boy. Both were happy to see me. And I was happier to see them. By then The Husband knew I lost my ring and he was upset but he helped me put things in perspective. "That's not the ring I first put on your finger. The original ring means more to me." Both rings have a sentimental value to me for different reasons. When he offered to buy me a new ring, I refused. I don't want a new ring. I want my ring.Later that afternoon, before heading out to lunch I slipped on the silver ring - my original wedding band and smiled. It's still too big and the ring guard annoys me but it's mine. I still wanted my other ring but I was grateful I had at least one. A ring is a ring - it means everything and yet ultimately it means nothing. Last June we celebrated ten years of marriage. It's been a decade of highs and lows. Our marriage is far from perfect. There are days we wear each other down and days we win each other over. We laugh, we love, we fight, we move on.A wedding ring is symbol of our commitment but it's not the thing that binds us and keeps us together. Our love does that.

Sunday, October 13, 2013

Disclaimer: The Mamas Network has been provided me with press pass tickets to attend The New York Birthday Show with my family. All opinions are my own.

The New York Birthday Show comes to the New York Hall of Science in Queens on October 20, 2013 with the biggest birthday party ever to provide families with tons of birthday experiences under one roof. Open to parents and children of all ages, attendees will have a blast at the ultimate birthday party and receive unprecedented insider access to some of the best entertainment, hands on activities, dessert samples, and DIY products currently available in area.

I have never been to The Birthday Party Show before and I'm so excited to be going next week! The Boy will be 8 years old in January and it's been years since we've thrown him a real birthday party. Every year it's the same thing - should we or shouldn't we? But this year, I really want to do something special. I'm hoping The New York Birthday Show will give me some ideas.

It's also going to be held at The New York Hall of Science - one of the many places we go.

(The New York Hall of Science presents 450 exhibits, demonstrations and design spaces that explain science, technology, engineering and math. A visit to NYSCI is a hands-on, energetic educational experience where you can indulge your curiosity and nurture your creativity.) The Boy is familiar with the Hall of Science so it should be a fun family day for us. Other things we'll get to see and enjoy will be:

Friday, October 11, 2013

It's officially a week since 14-year-old Avonte Oquendo has been missing. Last step as I stepped off the 6 train in The Bronx, I paused on the platform to listen to the announcement - it was a message about Avonte. I pulled Norrin's (I usually refer to him as 'The Boy') hoody over his head, the wind was picking up.Every night this week, I've wondered if Avonte's cold, hungry, tired and missing his mother. Every night this week, I've held Norrin's hand a little bit tighter. This story hits too close to home for me. And my emotions are all over the place. Avonte could easily be Norrin in a few years and it's scary to see how easily a kid could fall through the cracks of a broken system. Like Norrin, Avonte was in a 6:1:1 classroom in a Queens public school (District 75). Avonte walked out of his room, down two flights of stairs and passed a security guard. The guard asked Avonte where he was going, when he didn't answer (because Avonte is non-verbal), the guard assumed he was "one of the regular kids." The school took an hour before notifying Avonte's mother, Vanessa Fontaine.

The school was absolutely negligent and it's a disgrace. How are special needs parents supposed to have faith in the public school system? For me, it's just another glaring example of how the public school system is ill equipped to work with individuals with special needs. Something NEEDS to be done. I think of Norrin's kindergarten year and how hard I fought to get him out of that public school and away from District 75. And while I love Norrin's current school, still I wonder. Avonte reminds me of how vulnerable we really are. There are so many people I have to rely on - teachers, bus drivers, matrons, baby sitters. Will they be able to keep Norrin safe? Yesterday morning, I saw Avonte's mother on television and I cried. I could see the pain in her eyes and feel her heart ache. When you have a child with special needs, wandering is your worst nightmare - especially in a city like New York.

"[Avonte] is supposed to have one-to-one supervision at all times," Fontaine [Avonte's mother] said through tears. "He has the mental capacity of a 7- or 8-year-old." (CNN)

I don't know Avonte or any member of his family. But I grew up in Queens, I have a special needs sister who went to school in Long Island City. I have a son with autism. This is too close to home for me and I am praying for Avonte's safe return to his family. And I want to do everything within my power to help. Whenever a white child with autism goes missing, my social media feeds are saturated with posts and tweets. Blog posts are written and shared, hashtags used. There is this sense of urgency. I haven't seen that with Avonte Oquedo. When a brown kid with autism goes missing, the sense of urgency doesn't seem as great.Autism is a spectrum and it comes in every color. All of our kids matter. Avonte could be any of our kids. And I wish that more were being done in the media. New Yorkers often get a bad rap for being rude and apathetic but in these moments - we all really come together as a community. That's what I've seen this week. And that makes me so proud of my city. It gives me HOPE. Hope is all we have right now. Tonight (Friday, 10/11) at 5pm there will be a vigil in Queens for Avonte Oquendoat the tent next to Center Boulevard School in Long Island City.